Our guests were Marina Ravirez-Alvarado PhD and Dr. Philip Greipp of the Mayo Clinic in Rochester Minnesota for our April Meeting and it was so wonderful.
MAYO DAZE 1 -There we were 27 patients and care givers in the Siebens Building (has a green house on the top where many of the plants etc that beautify the Mayo grounds are grown and nurtured), having a wonderful meeting with Dr. Buadi, new to us but not Mayo. All had an opportunity to share and Q and A while eating breakfast and lunch. We had four newbie’s and we all contributed to alleviate anxiety and fear. It was great to have one of our kidney transplants (recent) there with her donator brother and both looked so great. They had been to our first meeting in fall of 2004.
Then Dr. Gertz came off rounds and came by to explain in the most wonderful terminology Kidney and Cardiac Amyloidosis……alleviating even more apprehension and helping to empower the newbie’s as well as the others. The bonus was being treated to a guided tour by Dr. Gertz through the main buildings (Gonda, Plummer, Siebens etc.) and the artwork ranging from Andy Warhol to Auguste Rodin’s 7 foot statue “Jean D’Aire…and Miro to Ellsworth Kelly to Calder and …..well you get the drift…..
The tour of the laboratory (anyone who went to Patient’s Day in Boston would have a bit of déjà vu)….was wonderful and Laura our tour guide (Marina was in a triathlon) was wonderful…..All were to give up their Saturday for us to learn and share and have a wonderful experience…..
Steve and I joined a couple from Arizona for dinner at “The Hubbell House Restaurant” …circa 1854 in historic Mantorville….Population about 1000…but quaint and charming….tomorrow we all have brunch with Dr. Hayman back at the Siebens Building…..definitely a wonderful weekend……and appreciated by all…..…
MAYO DAZE 2 - Dr. Suzanne Hayman was so wonderful to give up her Sunday to get down and dirty with us for our wonderful brunch. Our group bonded beautifully and we did think the requirement of reading a chapter a day of the Wheel of Time Series by Robert Jordan was a bit much; but realize that if Conan the Barbarian and Wheel of Time was her reading material and she was so brilliant and down to earth and amyloidosis savvy doctor, then her suggestions should be followed. Our brunch extended into lunch and we had an educational, bonding, sharing supportive, FUN time……THANK YOU EVERYONE FOR BEING SO WILLING TO SHARE…EVERY ATTENDEE AND DOCTOR GAVE OVER 100 PER CENT.
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We enjoyed having as our guest Dr. Nelson Leung nephrologist who answered all the questions the 20 or so patients and care gives had from dyalisis to transplant and everything you would want to know about the kidney but were afraid to ask.
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The Leukemia & Lymphoma Society Team in Training
Marina Ramirez-Alvarado, Ph.D.
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Please contact Muriel Finkel
muriel@finkelsupply.com
mangelamy@yahoo.com
866-404-7539 Toll Free USA
847-350-7540 - office
630-350-7539 - home
708-987-7711 - cell
Would like to have an accurate count for food purposes. If you have special needs as far as seating, or food, please let us know.
This is an open invitation to all of you within the sound of my voice, especially Minnesota, Iowa, North Dakota, South Dakota, Wisconsin, Manitoba, and all surrounding points.
We have had several requests for a support group for this area. We need a "leader" so please let me know if you are willing.
Please join us, we want Amyloidosis patients, caregivers and family members to join us for this meeting. Whether you can stay for a few hours or all day, you are welcome. This will be a great time of sharing and caring! If you need assistance with arrangements, there is help, just ask me.
We should have from 10-30 people at this meeting. Please contact me for more details or directions.
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On Oct 23 in Minneapolis was the Upper Midwest chapter of Amyloidosis support. First things first, a big thank you to Muriel and her husband for all the food, beverages and comfortable environment. With their thoughtfulness, we were all comfortable.
The day was spent with introductions and discussing our individual stories. We had much joy in seeing successful outcomes (people doing very well after SCT and Dex treatments) and we shared in grief with those that lost loved ones (I will always remember Vince). This was a day of sharing and sharing we did. I truly hope this day was of benefit to those of you that came and participated. I loved meeting everyone and hope you feel the same. I would love to be able to coordinate another meeting in the future.
I am hoping we can all gather again in early Spring (Aprilish). My best to everyone and thanks!
Theresa Pollnow, 9 Nov 2004
